An ASD-friendly holiday
Helping kids with autism make the most of Christmas
Ava Folkes sits with her dad, Jamie Folkes, patiently waiting as he views a video and folds paper origami for his daughter.
The home is decorated for Christmas. The stockings are hung. Christmas pictures are on shelves and the tree stands in the window.
There’s a person unknown to her sitting on the couch asking her mom questions.
This, her mother Natasha Folkes said, is much different than last Christmas, and even more different than six years ago.
“Ava was born on 12/12/12 and is a Christmas miracle,” Natasha said of her little girl born at 26-weeks’ gestation and at one pound. “We were all ready for Christmas and all of a sudden we ended up in St. John’s.”
Ava’s first picture with Santa took place at the Janeway Children’s Health and Rehabilitation Centre on Christmas Eve when she was 12-days old. She was the size of Santa’s hand.
She spent 100 nights at the Janeway in St. John’s, and when they took her home at four-months-old she was only seven lbs.
As a micro-preemie, she had numerous doctor appointments.
“She wasn’t making any milestones, which we knew was going to happen because she was so early,” Natasha said. “They did the adjusted corrected age so we said lets work on that.”
But as time went on, she wasn’t meeting her corrected age milestones. She wasn’t responding, making eye contact, and so on, her mother explained.
“At two years old I really started to get concerned,” Natasha said.
After testing, Ava was diagnosed with autism in August, just before she turned three.
When it comes to Christmas, or any new situations, the family takes it in stride. Working around what makes Ava comfortable.
Things have certainly changed for them in the past few months and they believe the holidays will be different as well.
“Last year Christmas was probably the hardest year on her,” her mother said. “My child actually gave me an epiphany.
“She was completely melting down last year after we had our tree decorated. We couldn’t figure out why and she was classified non-communicative at the time, so she really couldn’t figure out how to communicate what was wrong.”
After many days she finally was able to say “trees belong outside.”
“We are so used to having a tree inside for Christmas since the beginning of time, our minds aren’t wired like hers,” Natasha said. “She immediately thought that was a silly things to bring a tree inside. It just wasn’t ‘right’ to her.
“That stays with me all the time and makes me dissect every situation that is different for her to see what we may have done that was wrong on her eyes. We sometimes think so inside the box we never see the obvious… tree doesn’t belong in a living room.”
A year ago, the visit from The Central Voice to the family’s home wouldn’t have gone the same as it did last month either.
“She didn’t want anyone in her world,” her mother said.
Last Christmas, she brought family members to the gate at the top of the stairs in their home and told them all to go.
“She (Ava) was so overwhelmed,” Natasha said. “She screamed and cried. That was Christmas Eve last year. She did not want anyone coming here, so I thought next year we’ll make sure nobody comes. But she’s good as gold now.”
She even ran away at one point last Christmas to get away from people.
“This year I don’t think will be like that,” Natasha said, adding she thinks this is partially due to her communication.
In July Ava, her mother, grandmother and cousin took a trip to Florida.
“She was in bed with me and we heard her say, ‘I think I feel hungry today,’” Natasha recalled.
Not only was she speaking, she was expressing how she felt, and it was hungry, which her mother said was odd because she was on a shake diet because she has food aversions
“I started crying saying, ‘Mom what do I do?’ She said, ‘Get her some food,’” Natasha said. “From then on that was it.”
Ask Ava her name, birthday, favourite anything and she will tell you.
“She’s a different child,” her mother said. “The big behaviours and meltdowns she had are gone because now she can express. We all have our preferences of what we are in the mood for.”
There are still situations she isn’t comfortable around, like fireworks and blinking lights, and she won’t let anyone play Christmas music.
“It’s sensory overload for her,” Natasha said, adding they keep things as calm as possible. “If we take her to a party and she wants to leave, we leave.
“If we are at a home, everybody knows we don’t know what Ava we are getting. Sometimes she’s OK and people say, ‘I don’t even see the autism today,’ other times she can’t handle it, she’s too over sensitive.”
The family doesn’t make many changes when it comes to the holidays. This year the family tamed down the lights on their tree and Ava wanted to decorate it, and when it comes to crowds and visitors she is more comfortable.
The family was looking forward to the Grand Falls-Windsor Christmas parade and the sensory friendly zone they would be watching from, as well as the sensory friendly showing of “The Grinch” at The Classic Theatre afterwards, where they were having Ava’s birthday party.
Every Christmas Eve they visit friends (a tradition that started when Natasha was a young teen) and the children do a gift exchange and they do a little bit of visiting, whatever she can handle.
“I tell people if you don’t see me over Christmas, sorry,” Natasha said. “We are on her time. We go with the flow with her. We go with what she wants.”
Ava said she’s excited for Christmas. She has her letter written for Santa, and she asked for an “Apple card” as well as a “red and green piggy bank” and slime.
“She’s very happy,” her mother said. “She’s quite loved. She’s an angel.”
The Folkes family of Grand Falls-Windsor, from left, dad Jamie, Ava and mom Natasha, take the busyness of the Christmas season in stride, doing what Ava feels comfortable doing. Ava was diagnosed with autism just before turning three, so the family — though they say they don’t make many changes when it comes to the holidays — go on Ava’s time and what she wants to do.